Chemotherapy treatment can be a difficult and even frightening experience, but knowing what to expect from chemo drugs makes things easier. Learn what one woman – herself a cancer-drug pharmacist – went through when she was treated for breast cancer, along with expert advice on medications and chemotherapy side effects...

Amy Barr of Ravenna, Ohio, knew what she was in for when she began chemotherapy treatment for breast cancer in August 2010. She was an oncology pharmacist (a specialist in cancer drugs).

Still, she couldn’t avoid some common chemotherapy side effects, such as hair loss and intense fatigue.

Since December 2009, Amy had noticed a “weird-feeling smooth line” in her left breast, but it came and went, so she dismissed it. Then, in May 2010, while raising her arms to dry her hair after a shower, Barr spotted a “dimpled line” going down the side of the breast.

“I knew from working in oncology that this was not good,” she says.

After tests, she received the news: She had a lemon-sized tumor in her breast, plus extensive lymph node involvement. Amy named her tumor “Timmy” (after a bad date — the better to visualize fighting it off) and began chemotherapy soon afterward.

“I knew what I was facing,” she says. “The tumor was so big, I wanted to go with neoadjuvant chemotherapy” (chemo given prior to other treatments, such as surgery).

Because of her expertise with chemo drugs, Amy was able to help design her own treatment. She and her doctor opted for a “TAC” regimen — a cocktail of docetaxel (known as Taxotere), doxorubicin (Adriamycin) and cyclophosphamide (Cytoxan), typically delivered in six cycles (or rounds of treatment, several weeks apart).

“I was relatively young and didn’t want to take a chance, so I wanted all three drugs together,” Amy says.

Patients with locally advanced (stage 3) breast cancer like Amy are often given either a TAC regimen or “AC followed by T” — four cycles of Adriamycin and Cytoxan, followed by four cycles of Taxol, a drug similar to Taxotere, says Richard Schwab, M.D., assistant clinical professor in the division of hematology-oncology at University of California, San Diego and director of the university’s Cancer Center Biorepository, which stores blood and tissue samples for research.

Research shows it doesn’t matter if chemo drugs are given before or after surgery, Dr. Schwab says. “It makes no difference to the long-term cure rate.”

Chemotherapy treatment for breast cancer isn’t used to destroy the tumor. Rather, the goal is “to destroy any microscopic disease that we can’t see that may have spread beyond the breast — those microscopic cells are the dangerous ones,” Dr. Schwab says.

Before her chemotherapy treatment, Amy had a port surgically installed on her right side, just above her breast and below her collarbone. Ports provide an easy way to administer the chemo drugs.

As part of each cycle, Amy received the chemo drugs along with medications to combat nausea and to help beef up her immune system, as well as IV fluids for dehydration.

During the chemo infusions, Amy’s nurses gave her Fudgesicles to prevent mouth sores, which she never experienced. She also never had chemotherapy side effects such as nausea or vomiting, which she attributes to the anti-nausea medications, including aprepitant (Emend). (She did, however, have diarrhea for about a day during each chemo cycle.)

Anti-nausea drugs provided by oncologists work for most chemo patients, Dr. Schwab says.

“A patient really should never vomit on chemo,” he says.

If nausea does occur, he adds, doctors are able to “adjust the [anti-nausea] regimen to something stronger” to counteract it.

Other chemotherapy side effects vary, depending on the type of cancer a patient has and the drugs he or she is given.

“Each drug has its own side effects,” says Edith Mitchell, M.D., clinical professor of medicine and medical oncology at the Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia. “Also, when combined with other chemotherapy drugs, there can either be worsening of a side effect or development of new side effects.”

Amy encountered the following side effects with her chemotherapy treatment:

Fatigue “After the third cycle of chemo drugs, I just wanted to lie on the couch,” she says. “I was sitting up watching ‘NCIS’ reruns, unable to do anything else.”

She still managed to work, taking a one-month leave for her illness (including a week of leave time donated by co-workers). She also occasionally worked from home, and handed off some duties to others.

Fatigue is a common problem, which worsens as chemotherapy treatment continues, Dr. Schwab says.

“Many patients go on disability while undergoing chemo,” he says.

He suggests people going through chemotherapy treatment try to get up at a set time every day and go outside for at least a five-minute walk. Because those on chemo drugs can develop photosensitivity, he advises using sunscreen.

But don’t use stimulants to cope with fatigue – they don’t help, he says.

Hair loss Amy’s hair began falling out about two weeks after her first chemotherapy treatment. “I put my hand in my hair and gobs started falling out,” she recalls.

So she went to Walmart to have her head shaved. The stylist brought out a waiver acknowledging she was asking for a “drastic change” in her hairstyle.

“I put my hand in my hair and gave the stylist a fistful,” Amy says. “I told her it was going to fall out without her help.”

She also bought three wigs. They were itchy, but she occasionally wore them “so other people wouldn’t feel uncomfortable around me.” But she preferred scarves, she says.

Her hair started to grow back about a month after chemo ended. But a couple of weeks later, to her surprise, her eyebrows and eyelashes fell out.

“I thought they’d all fall out at the same time, but they didn’t,” she says. “I got my hair back, curly and full, and all of a sudden I look up and my eyebrows are gone, and then my eyelashes.”

These grew back within a few weeks, but in the meantime, she had to pencil in her eyebrows and lash line.

The only upside to chemotherapy treatment, she says, was losing the hair over the rest of her body.

“It was really nice being smooth everywhere — not having to shave or bikini wax or do anything,” she says, laughing. “I loved that! It’s like God’s saying, ‘I know this sucks, but you don’t have to shave or body wax for a couple of months.’ I was smooth as a baby’s bottom.”

Hair loss can’t be prevented, doctors say. Dr. Schwab says some patients have tried putting “cooling caps” on their heads during chemo, but he advises against this, because chemo drugs don’t reach the scalp and sometimes cancer can travel there.

Loss of taste
Amy didn’t lose her appetite — indeed, she developed a newfound craving for Sonic chili cheese dogs and fries. But she did lose her sense of “sweet.”

“I could order sweet tea and I would still want to add sugar to it. Froot Loops and Honeycomb didn’t taste the same,” she says.

Temporary loss of taste is a common side effect of chemotherapy treatment, Dr. Schwab says.

“Taste buds are lost with chemo; nothing can prevent that. They come back, although some patients — especially ‘foodies’ — notice their sense of taste doesn’t come back as it was before, particularly if they were into fine wine and things like that.”

Swelling (edema) Amy experienced swelling in her hands and feet, which can be a side effect of Taxotere. This was treated with diuretics (drugs that help the body excrete excess water).

“Chemo brain” Amy had always prided herself on her ability to retain numbers.

“If you told me what your phone number was in 1982, I would still remember it,” she says.

But that skill disappeared after the second cycle of chemo drugs — and remains a problem. “It’s frustrating,” she says.

Short-term memory loss and fuzziness, known as “chemo brain,” can linger for years after chemotherapy treatment is finished. There are no proven remedies, says Dr. Schwab.

Most patients recover their mental sharpness within a year or two, sometimes three to four (though some never recover fully), Dr. Schwab says. He suggests patients try brain-enhancing exercises, such as Sudoku or crossword puzzles.

Genitourinary tract irritation Amy also experienced one of the less common chemotherapy side effects — vaginal and urinary tract irritation. This would occur several days into each chemo drug cycle and last about three days.

“It hurt to pee and I got an unusual discharge from my vagina; the area was tender to sit on,” she says.

She found that flushable baby wipes were soothing when she had this irritation.

Sometimes women experience bladder irritation as a reaction to Cytoxan, says oncologist Sylvia Adams, M.D., assistant professor at New York University School of Medicine. Hydration after chemotherapy treatment (whether oral or by IV) can help, but patients also should be examined to rule out infection or ulcers, she advises.

Typically, a TAC regimen involves six cycles. But after Amy had undergone four cycles of TAC, “Timmy” had barely shrunk. Because she also has scleroderma, an autoimmune disease that can affect the heart, she and her doctor chose to cut her chemo short.

(Other reasons to stop chemotherapy treatment early, Dr. Schwab says, include poor tolerance by the patient, such as developing neuropathy, which is a type of nerve damage.)

Amy then had a modified radical mastectomy — the removal of her left breast and lymph nodes — followed by radiation.

“My entire left breast was removed. They pulled the pectoral muscle apart to get to the lymph nodes under the muscle in my chest wall. One of those lymph notes also tested positive for cancer,” Amy says.

She also began taking Tamoxifen, an estrogen receptor blocker, to keep her hormone-positive cancer from recurring.

As Amy looks back on her chemotherapy treatment, she says, “Some chemo drugs are going to make you sick and there’s nothing you can do about it.”

Still, it’s better to be forearmed with knowledge and prepared, she says.

“Having chemo is mind over matter,” she says.

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